Our son Finn arrived in a crowded room February 1st 2008 around 7am. As I lay there strapped to the c-section table I heard my husband say “it’s a boy”, quickly followed by “what is that thing on him?” I lifted my head as much as I could and yelled, “What’s on his face?!” Thankfully the large birthmark taking up approximately a third of our son’s back was not on his face.
We brought him home unaware of what this birthmark would entail. Our son Finn was born with a Congenital Melanocytic Nevus (often referred to as a big hairy nevus). The nevus itself is large and ugly looking and grows massive amounts of hair and although, it does not hurt, the skin is more sensitive then regular skin and prone to bleeding. It also does not sweat and needs to be covered at all times because the risk of it becoming melanoma is somewhere between 10- 15%.
Most children have one pediatrician. Before Finn was a year old he had seen his doctor, a pediatric dermatologist, an endocrinologist, a neurosurgeon, and a nutritionist. He had his first MRI before his first birthday. We found out that thankfully his birthmark does not affect his central nervous system which would further complicate things as that leads to tethered cord a condition that arises in about 20% of children with birthmarks like our son’s.
My husband and I were told by several doctors that the best course of action would be to have the birthmark removed because not removing it would mean frequent visits to the dermatologist as well as living in constant fear of the birthmark becoming cancerous. We made the decision to have the birthmark removed and began meeting with a doctor at CHOP. He explained the lengthy process that would most likely take place and we left with our heads spinning.
That summer all thoughts of the birthmark were put aside for more pressing issues. Finn had a hernia that became incarcerated while at daycare. We ended up rushing him to St. Peter’s hospital where they were able to get it back into place with surgery scheduled as soon as possible.
Once Finn had recovered from the surgery we began to make plans for another part of his life, which had been put on the back burner. Around his second birthday Finn was evaluated by early intervention because of his constant walking on his toes, which resulted in frequent falls as well as one trip to the ER for stitches. Early Intervention recommended that we begin physical therapy and we did. It was a proud day for me to watch my nearly three-year-old ride a tricycle down the hallway of the 5th floor at Hunterdon, something he had never been able to do.
January 10th 2011 we had to once again put physical therapy on hold as Finn went in for his first of three surgeries at CHOP. We met a terrific plastic surgeon who was new to the hospital and recommended a less time consuming and invasive way of removing the birthmark. They were able to take out a large chunk of the mark and we returned home the next day. We still have one or two more surgeries to go and during the time between surgeries need to focus fully on Finn’s physical therapy with hopes that we will not have to meet with a physiatrist, something that has been recommended if we cannot resolve his toe walking issues.
Our prayer for Finn is that in a few years all of these issues will be resolved and that by the time Finn is entering kindergarten he will be birthmark free and walking, running, and jumping like other children his age.